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Thursday, March 6, 2014


Carter saw Dr. Nancy Murphy last month for his annual and everything went great.  She reviewed all of his medicines, feeds, stats, health etc.  He has had 2 seizures in the past year, and 2 hospitalizations.  He has been very healthy (knock on wood) and doing great in school.  She was very pleased to see all this, and loved to watch him scoot.  She called it his bunny hop which is more accurate then a scrawl, lol.  We ended up weaning him off one med, so he's down from 6 to 4.  While we were there, Carter was rocking back and forth a lot and scrunching up the paper on the patient table.  She talked a little about autism, but said that autism can share similar actions as 1p36 deletion syndrome.  She wanted to talk more about it and possible medicines if we can wean him off his other things.  I'm not sure sure about that, because he is acting just fine to me.  I know he was not happy to leave school for this appointment, and was tired, so to me the rocking back and forth and crumpling paper wasn't peculiar.  He is a sensory seeking kid, but I don't need another diagnosis or med for him.  We talked about how we hardly use his bi pap anymore unless he's sick or breathing weird, so we are scheduled for a sleep study in May to determine if he needs it anymore.  His last hospitalization he went without it all night and never dipped in oxygen or had alarms go off.  Crossing my fingers if he doesn't need it, we can be rid of a big piece of equipment from his room and complication to our nightly routine.

We also had another parent/teacher meeting in February, which seems kind of silly with him being in preschool.  It's kind of cute though, so I go.  His teacher loves him and is very pleased with his progress.  He is working on attending to books more and not just turning pages (which he does well), he is working on hide and seek activities (he already has object permanence down), and putting things in and out of objects.  He likes to take out but is learning to put in as well as taking turns.  He is doing great in a walker at school and enjoys it.  She said he is the first to grab her hair in the morning or her badge, and loves music time and playing with different doughs.  He had a vision assessment done by his teacher and me but I'm not sure what that really shows yet.  We'll see the eye doctor again in the early fall to see if that can help with his IEP and keeping him where he's at.  She said overall he is very pleasant, affectionate and has great potential if given the chance.  You have to give him more time to respond to things, and when he wants to say yes he will raise or wave his arm.  If no he just won't respond.

We found a neat website called C.H.I.R.P. for Children's Health Information Red Pack.  You can fill out some forms about your child that will be stored in a tube in your fridge in case EMT's need it.  It's a way to have your child's diagnosis, medicines, past surgeries and doctors' contact info ready at a snap.  To alert the EMT's you have this information, they give you a magnet for your fridge and a sticker for the back of your front door.  It doesn't cover everything, but it's a great start if your kid has complicated health issues.  We've been to Primary Children's so many times that I always meant to have a binder all made up, but never did.  I thought it was a great idea so I filled it out and am just waiting for the tube, magnet and sticker to come.  It's easy to update and ensures current information in the case of an emergency.  The website is: go to general public-CHIRP parent/guardian login and start a new form.

As far as the respite goes, I have spread the word to some family and neighbors and have received only 1 interested response.  Carter has spring break at the end of the month and then summer break in June, so if no one responds by then I will probably go with an outside agency and hope we find someone we can click with and be comfortable with.  I was slightly disappointed that family wasn't interested, but it's understandable for some that already have their own kids.  I was really hoping to use my sister in laws but they are not 16 yet so they can't be paid.  Getting bigger pregnant is making it harder to lift and carry him around, plus Sierra always wants me too.

Carter's Kid Walk finally came in and it looks great!  We've tried it once since it was adjusted at school and Sierra just kept wanting to push him which is not the idea.  So maybe we'll have better luck as time goes on.  I'd love to see him using it and even go on short walks with it.  It's lime green and the wheels flash colors once it gets going.
Baby Update:  I'm over 20 weeks so halfway there!

1 comment:

  1. Heather I can help a little and maybe more in the summer. I have Adriaan in the mornings.